ALS costs Canada $628M a year, study finds

ALS costs Canada an estimated $628.2 million a year, and patients, caregivers and families carry about 78 per cent of that bill, according to a study released Oct. 14 by ALS Canada.

The Burden of ALS study, based on a national survey of 223 people with ALS and their caregivers plus focus groups, puts the average yearly cost at $157,000 per person living with the disease, CTV News reported. The average family spends about $123,000 a year, the study found.

About 4,000 Canadians live with amyotrophic lateral sclerosis and roughly 1,000 are diagnosed each year, ALS Canada said. There is no cure, and about 80 per cent of people with the disease die within two to five years of diagnosis.

Home changes and equipment drive much of the spending. Home modifications average about $25,000, and the largest single amount reported was $250,000. Respondents spent an average of $7,000 on new equipment in the past year.

Eric Hauser, 64, a retired music teacher from Markham, Ont., said he expects an elevator and bathroom remodel to cost more than $100,000. “An elevator is no longer kind of cool, it becomes a necessity if I want to get off this floor,” he said.

Much of the burden is unpaid labour. The study found 92 per cent of people with ALS depend on unpaid caregivers, and 94 per cent of caregivers have missed work because of that care. Nearly half of caregiver respondents provide 30 or more hours of ALS-related care a week, and nearly half of all respondents stopped working within six months of diagnosis.

“ALS is a health-care crisis, but when we look at these numbers it’s also a financial crisis,” said Tammy Moore, ALS Canada’s chief executive officer.

Public income support covers only a sliver of those costs. The Canada Disability Benefit pays a maximum of $204.20 a month from July 2026 to June 2027, according to the federal government. That is about $2,450 a year, or less than two per cent of the $157,000 average annual cost the study reports. The benefit is income-tested, is limited to people aged 18 to 64 and requires an approved Disability Tax Credit certificate.

Employment Insurance sickness benefits last up to 26 weeks, a fraction of the time many families spend managing the disease. Related reporting shows 31 per cent of Canadians with disabilities face food insecurity, a sign of how thin the margin already is for many households.

ALS Canada is asking Ottawa to invest $50 million in research over five years and warns Canada will keep falling behind the United States, the United Kingdom and Australia in research and clinical trials. As of publication, the federal government had not said whether it will provide the money.

The same ask surfaced Oct. 10, when Canadian Press reported research showing military veterans are twice as likely to develop ALS. Defence Minister David McGuinty said he has not seen evidence of a direct causal link. “But right now, it’s early. We’ll look into it,” he said.

Veterans Affairs Minister Jill McKnight pointed to $25 million committed over 10 years to the Canadian Institute for Military and Veteran Health Research. Conservative veterans affairs critic Michael Barrett said the government should contribute the requested funding. Bill Duff, a 39-year-old Royal Canadian Navy veteran and father of two, died Sept. 4 after a decade with ALS. “Federal funding matters because I don’t want other families to experience what mine has,” Duff said.

The coverage reviewed for this story did not name the study’s authors or an academic partner, and the cost estimates have not been independently checked. Whether Ottawa answers the $50-million request, and whether any support follows for families paying out of pocket, remains unclear.

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Via CTV News/CP24 and CTV News/CP24.